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It began on a dreary Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a intense pain sprang behind my right eye. It was followed by rapid stabs, reminiscent of lightning bolts. As each class progressed, the pain subsided and then returned with increased force. Multiple times that day I left a colleague with activities and ran to the school bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The headaches returned frequently that autumn, and again in spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-on pain in class by 9.30am. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with severe discomfort behind one eye that persists for three hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more often affected. Cluster headaches usually start with abrupt, excruciating pain focused on a single eye that peaks within minutes and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in periodic bouts; others have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 10, more severe than broken bones or other conditions. Another found 64% of cluster headache patients reported suicidal thoughts during attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, like several triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a national hospital.

Nevertheless, the inability to plan daily activities around erratic attacks took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the disease to an malevolent entity who afflicted his victims' heads.

Historical healing texts propose bizarre treatments for what modern observers would describe as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with treatments ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing daily at specific hours”.

Cluster headaches were only officially classified by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery that supplies blood to the head. Prominent experts in treating the disorder explain this.

In the late 1990s, researchers published the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a calm advisor guided me through oxygen therapy and drugs until the episode eased.

National guidance on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But consultant specialists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Short cycles with infrequent attacks are managed with abortive therapy only. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that decreases nerve activity.

The official guidance need revising to reflect a